Don’t Stress…ha!

I had my first Rheumatologist visit a couple of days ago. She was nice and thorough. She asked a lot of questions and did a physical exam. She also drew 12 vials of blood, did a chest X-ray and X-rays of my sacroiliac joints.

purple ribbonShe is leaning toward Lupus, but we will have to wait on the blood tests to be sure.

I go back in 3 weeks for the results.

In the mean time, I asked a few questions about Lupus and the do’s and don’ts. She basically told me to do what I feel like and rest when I need to. This is a hard transition for me. I am used to pushing through regardless of what I feel like. I’ve had back issues for years and always worked through the pain, but this fatigue is something new for me.

When I got home, I did what all good patients do and Googled it. Luckily, the doctor told me it is a spectrum type disease. This means that every person with this disease looks different. It also means that one person can look different each day. The reason I say “luckily” is that the things I read are scary. There are certain things that can cause flare ups. #1 on most lists is…STRESS. How do you not stress when you don’t know what your body is doing? When work is tough and your anxiety is already high and your body is fighting against itself?

This disease can be bad. Mayo Clinic says that people may experience:

  • Pain in the muscles (and joints). Pain can occur while breathing, which is scary and can be sharp in the chest.
  • Whole body symptoms can be anemia, fatigue, fever, or malaise.
  • The mouth often has dryness or ulcers. Skin may experience red rashes or scaly rashes. Attractive, right?!
  • Also common: anxiety, blood in urine, clinical depression, face rash, flare, headache, joint stiffness, raynaud’s syndrome, sensitivity to light, swelling, water retention, or weight loss

So, all this but don’t stress. How do you do that?

For me, I have to kickbox. That’s my outlet. It’s been an amazing outlet, but there are some days I need to rest. So what then? I’m not sure yet. I have to figure out an outlet that requires less of my body (besides sleep). If you have any ideas, let me know!

 

Fly high, Unicorns!

I wasted time today

I never used to worry about or even think about wasted time.

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Photo by Stas Knop on Pexels.com

Today I woke up 30 minutes before my alarm. I laid in the bed for about 15 or 20 minutes before I got up. That doesn’t sound like a big deal, but I woke up feeling good. That was 15 good minutes I wasted scrolling through Facebook and Pinterest.

I didn’t used to worry about wasted time. We all waste time scrolling or daydreaming or whatever your thing is. It’s not a huge deal.  But now I never know how many “good” minutes I have in a day.

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Photo by Kat Jayne on Pexels.com

It’s bizarre how I can be fine one minute and within just a few minutes joints and muscles start to hurt. Fever rises. Nausea hits. And I’m down for the count.

Occasionally, it goes away just as quick. Usually it stays for a while. An unwanted visitor.

How can I afford to waste the “good” minutes? I can save the scrolling for the achy times when being still is the only option.

Let’s go, self! Seize the day!

Fly high, my unicorns!

More to the Journey

Joint Pain, Fever, and Nausea…oh my! Screen Shot 2019-02-06 at 11.40.04 AM

This whole long ride began with constant nausea.  Then came the fever. It is usually only 2 degrees.  Just enough to be a pain and cause a sweat when it breaks.  Also enough to cause a fever blister.  7 in 4 months! Ugh!  The fever and nausea subsided for a little bit.

I am noticing more prominent pain in my joints, specifically my knees, but others as well. I don’t know if it is the changes we have had in temperature (up, down, up, down) or if it is just becoming more of a thing, but it sucks. 

My skin is changing, too. Luckily, Younique just started a new line of skin care called You•ology.  I can already tell a difference after a week, but that’s another post!

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Now, I am fighting the fever again and nausea is back. This time around the fever is moving on up to 3 degrees at a time. Seriously? How does 3 degrees make that big of a difference? I am totally over it.  I don’t really feel sick when I have fever, but I am ridiculously tired.

It all comes in waves which stinks because I never know what to expect.  One minute, I am fine and the next I am nauseous or the other way around.

I am still waiting to see a rheumatologist (on Valentines) so maybe she will have more info for me but that’s over a week away. We’ll see.

All of this to say…nothing.  Nothing has changed. Good or bad.  I just keep on keeping on.  For those who are following my journey, I will continue to post updates here, but I will also begin to post other things here as well. I am working hard at my health and it’s not all bad news.  I’ve come a long way in the last year and I want to share that with you too.

More is coming…soon.  Until then, fly high, my unicorns!

Invisible Unicorn

Skin changes and YOU*ology.

Autoimmune has my whole body spinning.

childhood colorful coloured colourful
Photo by Anthony on Pexels.com

One minute I am running and fever and can’t keep my eyes open…the next I am nauseous and dizzy…the next I am full of an unnatural amount of energy.

My skin is changing, too. It’s dryer in places and breaking out randomly. I’ve always had really good skin. With minimal care, it’s always stayed clear and not dry or oily.  My cleanser has been great, but since October I have slowly noticed these changes and those fever blisters don’t help either.  Luckily, Younique just started a new line of skin care called You•ology.  I can already tell a difference after a week.

Youology
Cassie*ology, with a lil puppy on the side.

This cleanser came with three boosters that make it unique to my needs.  There are six to choose from and if you take a quick little quiz you can see which ones will benefit you best!

The combo of this and my rose water toner make me a happy girl!  I think the cleansing cloths will be my next purchase for quick and easy!

 

 

(In the interest of full disclosure…I do sell Younique and have used our cleanser since I started selling. I started selling after having only used one product-the mascara. It’s that good, lol. It’s specific to you and your needs. (click here, if you want more info)

Neuro…what?

“We do not learn from experience… we learn from reflecting on experience.” –John Dewey

Neuropathy.

Peripheral neuropathy is a general term describing a disease affecting the peripheral nerves, meaning nerves beyond the brain and spinal cord. Neuropathy can affect different types of nerves (motor, sensory, or autonomic nerveswhich results in different symptoms. Some people are “lucky” enough that more than one type of nerve may be affected simultaneously. Info adapted from https://en.m.wikipedia.org/wiki/Peripheral_neuropathy

So this is the newest diagnosis. Welcome to the family!

The Neurologist said it is definitely neuropathy making my feet go numb. Most likely associated with autoimmune. She wants to do a nerve test in a few weeks (as soon as they could get me in) to check for permanent damage. I am starting a nerve medicine to help with feet.

I am going to see a rheumatologist on Valentines and will follow up with the neurologist after rheumatologist does blood test. If nothing comes back with rheumatologist the neurologist will run additional tests. Hooray!

My hands are also going numb but it is more likely carpal tunnel. She told me to sleep in wrist splints and see if that helps. I’ve slept in them for 3 nights and not noticed a change, but I’m hopeful.

The one thing I am thankful for is that she didn’t tell me I have to stop kickboxing. That’s kinda my happy place. I’d be mad if she made me stop that, but I’ve also learned to listen when they say stop. (See this post)

So, until next time keep flying unicorns!

Good Grief

Grief is deep sorrow.  It is usually associate with the loss of a loved one but can be associated with any major loss.

The 5 stages of grief and loss are:

  1. Denial and isolation;
  2. Anger;
  3. Bargaining;
  4. Depression;
  5. Acceptance.

People who are grieving do not necessarily go through the stages in the same order or experience all of them. (Psych Central)

Most people who are diagnosed with a chronic illness deal with some form of grief.  The difference is they are dealing grief centered around a person who is still here and trying to function in a world where no one sees what is really going on.

I have had back problems for over 10 years but was only diagnosed with Degenerative Disc Disease about 5 years ago.  It seems like a lifetime ago.

MRI

You can see in the yellow circle the bottom disc is squished and the next two are disappearing.  Normal discs appear as a bright white.  My doctor actually told me during one appointment that my back looks twice my age. (Thanks, Doc!)

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About a week after this picture was taken, my doctor told me under no circumstances should I be running.   I was devastated.  I decided that my doctor didn’t know my body as well as I did.  I was in denial.  I continued to run, even going out of town to run in the “Biggest Loser” 5k.  I would run for a while, need a nerve block to even walk, rest…then run again, need a nerve block…you see the pattern.  Eventually, I realized I could not keep going like this.

At this point, I was full of angerAngry at God, angry at myself for pushing too hard, angry at anyone who could still run.  I just stayed in this angry place for a while but being a good southern girl people expect you to just smile and say “I’m fine. How are you?”

 Then, I began bargaining with God, with myself, with anyone who would listen.  Maybe I could run on the elliptical and then be able to run the races on the asphalt. It didn’t take me long to realize the elliptical (while better on your knees) is the same motion on your back.  This led to what I call a “mini-depression.”  Depression effects every area of your life.  Not only was I not exercising anymore, I didn’t want to do anything.  I didn’t care about nutrition or anything else health related.

At some point, I slowly eased into acceptance.I don’t know at what point this actually happened because it was truly a slow build.  A few years ago, we joined a church and became family with people who support us and uplift us.  I cannot tell you what a difference it makes to have a community that encourages you.  (I say “us” because this journey is not mine alone.  My husband is in it with me 100%. I am so very grateful that I have him to be my rock when I need him.)

Then March, I joined a kickboxing gym (ILKB) and began on a new health journey.  I met people who encouraged me in this journey.  Not only the instructors, but the people who are on the same journey I am.  We are all just working on moving our health to a better place.  Most recently, like 3 weeks ago, I joined a group of amazing women (FiA Memphis) who are encouraging me to be a better me not only physically but in all areas of my life.

So, yes, grief came at me hard and fast, but slowly and by the grace of God, I am doing more now than I ever was before.  My new 100% may look different than my 100% from 10 years ago, but I am ready to give it all.  And on the days when I can’t, I’ll lay down and rest knowing that is A-Okay and get up when I am ready to fight another day.

 

 

2018 Reflections

Over the last few days I have spent some time reflecting over the last year.  I have been focused on all the bad things that happened because there were so many.  I had a few friends remind me not to forget the good stuff because there was plenty to be grateful for.  I decided to sit down and really focus on what that might be.

In January of 2018, I was selected to become my school’s interim assistant principal.  I had a goal of being in administration by the time I was 35.  I missed it by 3 months, but that was close enough for me.  I quickly realized that was not the avenue for me, but I had set a goal and met it (or close enough).  I truly believe it takes drive to get to a goal, but it also takes wisdom to know when that goal is not the right place for you.

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In February, this position as an administrator allowed me the opportunity to travel to Walt Disney World to watch our cheer team compete at Nationals and Worlds.

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In March, we were able to go on a beach trip (that we had planned and paid for long in advance luckily).

In April, I joined ILKB Bartlett.  Joining this kickboxing studio was truly a defining moment in my life.

I never realized that God would use ME in healing my body.  I was nervous.  I was doubtful.  But I was also hopeful and excited.  This allowed me to not only work on my physical body (which would play an important role in the months to come), but also allowed me to meet a wonderful #fitfam who taught me that I am capable of amazing things. I could go on and get mushy, but I won’t.

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In June, we got to celebrate my father in-law’s 80th birthday! He is an amazing man and it was a joy to get to spend this time with family.

IMG_4432In September, I celebrating my birthday but even more exciting, an accomplishment I would not have been able to complete just a few short months previous.  We were challenged to 20 classes in 26 days.

In October, I got to go with my 2 favorite guys to the mountains.  We stayed at an airbnb that belongs to a friend and had the most wonderful and much-needed getaway without breaking the bank.

Not long after we returned home is when  my symptoms began to flare.  This is when my focus turned darker.  It’s not that I was depressed, but I just had so many questions.  I still do.  I started out just feeling queasy and tired.  Gradually the vomiting became my norm.  At first, it was just after I ate.  Then, it became more often.  Over about a month or month and a half, I lost 11.5 pounds that wasn’t intended.  You may be thinking ‘here she goes down a rabbit hole of negativity’, BUT WAIT…I was blessed during this time too.  My husband was so supportive and stayed right by my side all the way.  He took care of everything I needed at home.  At work, yes I was working during all of this, my principal and assistant principal bent over backwards to help me continue to work while maintaining my sanity and dignity.

I have been blessed to have so many people around me who are so supportive in every way imaginable in every part of my journey.